Mets now in my brain
Hi Everyone my latest scan has been a shock and made me sad. I was on enhurtu and hoping for big success. However after 4 round 2 of my liver mets increased and now i have mets in the right side of my brain. I fell over in the last treat cycle and got a black eye and I also fainted one night. Luckily the bed was beside me when I fainted. My oncologist phoned me with my results Friday and I am numb. She said the plan is this. I get a port monday, tues chemo, thurs I have a skin check (melanomas) and the oncologist is ordering an mri of the brain for my radium oncologist. I don't have an appointment yet but the plan is to radiate that brain met. Then I have one other enhurtu infusion in September and another scan. My oncologist tells me there is other chemo we can try and the brain mets will be treated with radium. My husband and I are in shock and sad. My mets has progressed so fast - 2 yrs and several treatment changes already. This is so hard.What The Heck Radiation and Chemo? What to do and the side effects, are freaking me out.
In July, I had a mastectomy with lymph nodes out, then they found cancer somewhere else in the body with completely no relation to the breast cancer. If the breast cancer wasn't enough. So, now I have to deal with the other cancer site, which is colorectal, and I have just had an appointment with the radiation and chemo doctors at Royal Brisbane Women's, and I don't mind admitting I'm freaking out. The side effects of the 50/50 cure seem to be so much worse than the actual disease. Yes, I know that the disease, if left to run riot, equals, you know. But, after all these years of funding and funding, why do we not have something better? It's so weird that since my surgery, I have had posts popping up on my socials left right, and centre. Like the "Cure from Japan with Bee Venom" seriously makes me want to find a hive and fly into one with wanton abandon. A "Breakthrough in South Korea, scientists can turn cancer cells back to normal cells," .. Say WHAT? (frantically looking up flights to S Korea) Then there is Ivermectin, Febendazole, and something blue? I mean, I have never paid attention to these things before, but now, my ears prick to the slightest twitch and rustle, like a kid who hears a lolly bag open within a 10-mile radius. I can't help it, I am confused about everything, am I the only one? When I confronted the chemo doctor about all of my concerns and questions, he said If you don't do this, you will be in palliative care in 3 months .. What, hang on what the heck???? I mean, just like that, he said that without any pause or thought, I was never advised that before, and then said, "Whatever you decide, we start therapy on the 28th July, and proceeded to walk out. This journey is brand new; everything has happened since July, and it is no lie, akin to riding a faulty wooden roller coaster with loose nuts, bolts, and rotting timber, operated by a maniacal, crazy clown, in the middle of a thunderstorm, who looks like he has been dragged through a hedge backwards. Just to clarify, the clown is the cancer. I have questions, a thousand of them, with no end of these questions in sight. Where are the natural alternative therapies, like, singing bowls, or is humming drums? What about the milk from an Aztec goat? Yeah, or the petals from a rare flower that only grows on top of some hidden temple in the Amazonian forest, which, on recent reading, is currently swarming with giant anacondas in a breeding frenzy, ugh! Ok, I made up the goat and flowers. No, there is only radiation and chemo. Sigh! I don't know what to do with this option. I have been told my cycle will be 28 days straight of radiation with chemo. I can look forward to a burning bum hole, diareah, burnt skin, possible issues with legs and bladder, and kidneys, and all sorts of other stuff. However, I was told that everyone is different and responds differently. Well, I have to say I don't feel that comforted at all. I am overwhelmed. If anyone can share with me their experience with radiation and chemo, I would love to hear from you. And if anyone knows where I can get my hands on an AZTEC goat in Brisbane, I would love that too!! Goats are ravenous but cute.
Recommendations-North Brisbane -Public v Private- Surgeons
Hi Everyone, I do hope everyone is travelling as well as they can be. Was hoping to hear of experiences and recommendations about Public v Private -North Brisbane. My GP has advised if I choose to go private then I need to find surgeon and they can send referral. Not sure where to start…have rang some surgeons, am feeling like I am looking for a needle in a haystack. Has anyone had experiences with going private and having significant out of pocket expenses? Or going Public and what wait times/facilities are like, that they are comfortable in sharing. Preliminary advice is that it is likely treatment will be Chemotherapy then surgery, nothing confirmed until appointment with surgeon.
Is there a window period that chemo should start?
I was recently diagnosed with IDC - had lumpectomy and 2 sentinel nodes removed in first surgery on 17th June, in one section of the margin they found DIS right to the edge so needed 2nd surgery 2 weeks later which was all clear thankfully. Was due to start chemo 2 weeks after that however developed post surgery infection and was in hospital for 4 days, chemo has been delayed another 3 weeks so its been quite a while since my first surgery. I'm concerened about the delay, has this happened to anyone else?Friday Update - 1st August 2025
Hello and welcome to our Friday Update! Whether you’re new to the BCNA Online Network or a long-time member, we’re so glad you’re here. This safe space built on connection, understanding, and shared experience. Last month, we’ve seen powerful conversations, and practical advice shared across the community. From navigating treatment side effects to finding emotional support, your contributions continue to make this network a safe and empowering place for all. If you’re just joining us, we encourage you to explore the forums Get started here introduce yourself, or simply read along. And if you’ve been with us for a while, thank you for continuing to support others. 💬 Trending Online Network Discussions – July 2025 Bone and join pain side effects of chemotherapy Offering practical advice and emotional support for those newly starting chemotherapy treatment. From bad to worse, but getting better. Metastatic breast cancer (MBC) after previously having early-stage cancer. Kindly sharing story with the community, sparking conversation and shared experiences. Implant or Autologous Flap? Exploring reconstruction options post-mastectomy, with members sharing their experiences with implants versus DIEP flap procedures. WHO do I tell? Emotional challenges of disclosing diagnosis to loved ones. Members sharing advice on navigating conversations with family and friends. Letting go of blame - WHY did I get cancer? Inspired by a BCNA podcast, this discussion sparks meaningful dialogue about emotional healing and self-compassion. 🌟 BCNA Highlights – July 2025 Expanding the ‘Seat At The Table’ Program BCNA continued to grow its internationally recognised Consumer Representative Program Seat at the Table program , empowering people with lived experience to influence cancer research, policy, and care. This initiative ensures that real voices shape decisions that affect breast cancer patients nationwide. BCNA Consumer Representative Kym shares what she thinks Do you think it’s important that those with lived experience are involved in research? Global Advocacy for Metastatic Breast Cancer BCNA joined forces with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada) at the Australian High Commission in London to launch a joint advocacy pledge. The united call to action urges governments and health systems worldwide to count and recognise people living with metastatic breast cancer; a critical step toward improving care, visibility, and support. Watch Together for visibility, equity, and support! Exciting News! BCNA is proud to welcome Red Energy as our inaugural Principal Partner. This partnership marks a significant milestone in our mission to support all Australians affected by breast cancer. Together, we’re powering hope, connection, and change. Stay tuned for more on how this collaboration will make a meaningful impact. Male Breast Cancer Awareness In November 2024, Martin noticed signs that something was wrong with his health. Read his story via the link Humbled by the love and support 📅 BCNA Events BCNA Pink Lady Match – Sunday 10 August 2025 Join BCNA and major partner Red Energy at the Melbourne Cricket Ground (MCG) as the Melbourne Demons take on the Western Bulldogs in support of Australians affected by breast cancer. Watch video Pink Lady Match is back, and tickets are on sale now Event Schedule 1:30 PM – BCNA Tribute Field opens in Yarra Park 1:30 PM – BCNA merchandise available outside Gate 1 and between Gates 5–6 2:00 PM – MCG gates open; attendees take seats for entertainment and pre-match ceremony 3:00 PM – Players enter the field 3:20 PM – Match begins Carman’s Fun Run Sydney– Sunday 21 September 2025 🏃♀️ Location: Metcalfe Park, Pyrmont, Sydney Time: 6:00 AM – 1:00 PM AEDT Event Options Half Marathon (21.1K) – Wave A: 7:15 AM | Wave B: 7:20 AM 10K & 5K Runs – Waves start from 9:00 AM Pink Lady 5K Walk – Starts at 10:15 AM Read more and register via the link Carman’s Fun Run 2025 - Sydney That’s a Wrap! Thank you for joining us for another month of connection, support, and shared strength in the BCNA Online Network. If you have any questions, concerns, or feedback, please don’t hesitate to reach out to our moderators via BCNA_Mod or email helpline@bcna.org.au . We’re here to help and always happy to hear from you. Until next time, take care and stay connected! BCNA_Mod Team
Struggling through Chemo
Hi all, My nurse has just introduced me to this group. I’m hoping to connect and share my story and hopefully somehow feel better. After being diagnosed and a short time later having a mastectomy and all lymph nodes removed, chemo started just before Christmas and I am struggling with it! Ive got another 2 months of chemo before 5 weeks of Radiation…… would love to hear other stories. I have a fantastic support group of family, friends and colleagues but they just can’t possibly understand what I’m going through. Looking forward to connecting 😊Recently diagnosed DCIS
Hi, Like everyone I never thought I would be here...yet here we are! I have recently been diagnosed with IDC Er/pr + HER2- tumour was 9mm grade 3 ki67 40, lymph nodes negative but there were 3 cells. I'm 53 and postmenopausal with ovaries removed 2 years ago. I've had 2 surgeries in 4 weeks. The tumour was successfully removed, however the margin in one section showed DCIS right to the edge so they took a little more tissue which came back all clear. I met with my oncologist today and he has recommended 4 cycles of chemo, radiation and then hormone therapy. The Chemo he is recommending is TC, oes anyone have any experience with this treatment please. I'm pretty sure I will do it as I want to give myself the best chance possible for full recovery. Thank you
Resources for my kids
Hi everyone 👋 I'm 34 years old and recently diagnosed. About to start chemotherapy and want to find some books or resources to help me talk to my young kids about it when I start. I think my 4 year old daughter is going to be particularly shaken by the hair loss and visible impacts of chemo. Any recommendations?
Chemo treatment decision
I was diagnosed with IDC in my left breast in April 2025. I have had surgery and am now navigating treatment options. I had my tumour tested with the Oncotype DX test and it came back in the middle range for benefit of chemo being possible. I was hoping it would come back as either low score so no benefit or high score large benefit so I didn’t have to make the decision on whether to proceed. I discussed with my oncologist who was surprised it had come back as the score it did as he was convinced it would have been low. My tumour was 16mm had some lobular feature and DCIS and was also vascular but hadn’t got to the lymph nodes. So I do have an additional risk factor there. I feel like I want to know I’ve thrown everything at it so if it comes back I know I did my best as I’m a what if person. He supports this and my age he supports a decision to do chemo if I want to. I just want to hear stories of people who have had similar situations as I know the decision is individual based and that chemo won’t be a walk in the park either. thanks in advance for any insights.
